Purpose: To provide an educational forum on caregiver burden and stress, interventions to soften burden as well as resources for support.
Objectives:
Educate the reader about caregiver burden and stress.
Provide strategies and tips for reducing caregiver burden and stress.
Provide additional resources for the caregiver.
Provide guidelines/resources for the healthcare provider working with caregivers.
What is caregiver burden? Caregiver burden is defined as the “negative effects of the caregiving experience” which includes several dimensions such as physical, psychosocial, emotional, social and financial consequences (5). There are three main populations in which caregivers are usually needed: dementia (including Alzheimer’s Disease), stroke and cancer (4). Depending on the situation, caregivers are usually unpaid and inexperienced adults caring for an older adult in their family. Many caregivers assume their role unexpectedly and even those that plan to assume the role are not adequately prepared for every situation. These individuals are subject to long hours of care (>40hrs/wk), labor-intensive tasks, restricted social activities, increased stress and worry, more emotional turmoil and decreased quality of life. Consequently, they are at a higher risk of adverse health conditions and chronic illness such as depression, heart disease, and diabetes (4;5).
What are the impacts of caregiver burden? A study by Kuzuya et al. demonstrated that a heavier caregiver burden and stress leads to a higher likelihood of adverse health outcomes for care recipients (our patients). Heavier caregiver burden and stress also leads to higher likelihood of re-hospitalization of the care recipient (3). Many times increased caregiver stress is most closely linked to decline in physical and mental well-being such as the development of depression, anxiety and emotional stress due to the responsibilities they take on alone (4;5). In turn, this creates a less than optimal healing environment for the care recipient. It has been evidenced in research that stroke survivors have a better recovery when the support system is healthy (5). These individuals play a crucial role in the well-being of their loved one and our patient. Therefore, it is increasingly important for healthcare providers to understand caregiver burden/stress, be knowledgeable about appropriate resources for these individuals and to be conscious of a move toward a caregiver-centered approach to care versus a patient-centered approach.
Suggestions for Management:
First, it is important for healthcare providers to identify the primary caregiver of the patient in order to develop the treatment plan. According to Keeling et al, working with the “wrong” person can negatively impact patient outcomes (1). It is a healthcare providers responsibility to make sure a “caregiver-centered” environment is created just as well as a “patient-centered” environment in order to provide comprehensive care. Research shows that caregivers seek education and understanding from the healthcare team since they usually lack the experience and knowledge in the area of providing appropriate care for people with medical conditions (1). Drench et al. report that caregivers want to know and understand the diagnosis, prognosis, treatment options, tests, care plans, and what to expect in the future (1).
What can the healthcare team do (1)?
Deliver information during non-stressful situations/environments.
Avoid giving too much information at one time to prevent overloading the individual.
When providing written materials use larger print and write at a 6th grade reading level.
Ask questions to determine what information they need or want. Do not assume the information you are providing is exactly what they need.
Make yourself available to contact if they have questions.
Develop trust and rapport with the caregiver. Be respectful of their wishes, questions and concerns.
Provide resources for education and community support.
Give your caregiver an assessment and stay up to date on the status of their well-being.
Zarit Burden Interview (specifically for caregivers of dementia patients)
General Health Questionnaire (not disease-specific)
Other Management Strategies (2): Every caregiver should be provided with information about respite care, counseling, and support groups in order to give them many outlets to cope with their new and changing situation.
Respite care helps decrease burden and stress by providing daytime or nighttime relief from duties while a trained healthcare provider or volunteer comes in to provide care. It allows the caregiver to have a time to spend however they need to spend it and regain control over their own life.
Counseling and support groups provide another outlet for caregivers or patients. Counseling is helpful to release emotions and thoughts to a neutral person as well as learn coping strategies. Support groups allow individuals with similar situations to connect and help one another through each experience. There are also online support groups so that the caregiver does not have to leave home.
References:
(1) Drench M, Noonan A, Sharby N, Ventura S. Psychosocial Aspects of Health Care. Third Ed. Upper Saddle River NJ: Pearson Education Inc. 2012. Pg 203-208;212-215
(2) Guccione A, Wong R, and Avers D. Geriatric Physical Therapy. Third Ed. St Louis Missouri: Elsevier Mosby. 2012. Pg 151; 217-222.
(3) Kuzuya Masafumi et al. Impact of Caregiver Burden on Adverse Health Outcomes in Community-Dwelling Dependent Older Care Recipients. The American Journal of Geriatric Psychiatry. 2011;4:382-391.
(4) Rigby H, Gubitz G, Phillips S. A Systematic Review of Caregiver Burden Following Stroke.International Journal of Stroke. 2009;4: 285-292.
(5) Sorrell J. Moving Beyond Caregiver Burden: Identifying Helpful Interventions for Family Caregivers. Journal of Psychosocial Nursing. 2014; 52:15-18.
Purpose: To provide an educational forum on caregiver burden and stress, interventions to soften burden as well as resources for support.
Objectives:
What is caregiver burden? Caregiver burden is defined as the “negative effects of the caregiving experience” which includes several dimensions such as physical, psychosocial, emotional, social and financial consequences (5). There are three main populations in which caregivers are usually needed: dementia (including Alzheimer’s Disease), stroke and cancer (4). Depending on the situation, caregivers are usually unpaid and inexperienced adults caring for an older adult in their family. Many caregivers assume their role unexpectedly and even those that plan to assume the role are not adequately prepared for every situation. These individuals are subject to long hours of care (>40hrs/wk), labor-intensive tasks, restricted social activities, increased stress and worry, more emotional turmoil and decreased quality of life. Consequently, they are at a higher risk of adverse health conditions and chronic illness such as depression, heart disease, and diabetes (4;5).
What are the impacts of caregiver burden? A study by Kuzuya et al. demonstrated that a heavier caregiver burden and stress leads to a higher likelihood of adverse health outcomes for care recipients (our patients). Heavier caregiver burden and stress also leads to higher likelihood of re-hospitalization of the care recipient (3). Many times increased caregiver stress is most closely linked to decline in physical and mental well-being such as the development of depression, anxiety and emotional stress due to the responsibilities they take on alone (4;5). In turn, this creates a less than optimal healing environment for the care recipient. It has been evidenced in research that stroke survivors have a better recovery when the support system is healthy (5). These individuals play a crucial role in the well-being of their loved one and our patient. Therefore, it is increasingly important for healthcare providers to understand caregiver burden/stress, be knowledgeable about appropriate resources for these individuals and to be conscious of a move toward a caregiver-centered approach to care versus a patient-centered approach.
Suggestions for Management:
First, it is important for healthcare providers to identify the primary caregiver of the patient in order to develop the treatment plan. According to Keeling et al, working with the “wrong” person can negatively impact patient outcomes (1). It is a healthcare providers responsibility to make sure a “caregiver-centered” environment is created just as well as a “patient-centered” environment in order to provide comprehensive care. Research shows that caregivers seek education and understanding from the healthcare team since they usually lack the experience and knowledge in the area of providing appropriate care for people with medical conditions (1). Drench et al. report that caregivers want to know and understand the diagnosis, prognosis, treatment options, tests, care plans, and what to expect in the future (1).
What can the healthcare team do (1)?
Other Management Strategies (2): Every caregiver should be provided with information about respite care, counseling, and support groups in order to give them many outlets to cope with their new and changing situation.
Online Resources:
Addressing Caregiver Issues (For the PT): http://physical-therapy.advanceweb.com/Article/Addressing-Issues-of-Caregiver-Burden.aspx
Zarit Burden Interview: https://www.healthcare.uiowa.edu/igec/tools/caregivers/burdenInterview.pdf
Full Circle of Care (Comprehensive guide): http://www.fullcirclecare.org/index.shtml
Caregiver Coping Strategies (Brain Injury): http://www.brainline.org/content/2009/09/caregiver-coping-strategies_pageall.html
Caregiver Support (Cancer): http://www.cancer.org/treatment/caregivers/copingasacaregiver/
Stress Relief (Dementia): https://www.nia.nih.gov/alzheimers/relieving-stress-anxiety-resources-alzheimers-caregivers
Caregiver Resource Kit (Medicare): http://www.medicare.gov/campaigns/caregiver/caregiver-resource-kit.html
References:
(1) Drench M, Noonan A, Sharby N, Ventura S. Psychosocial Aspects of Health Care. Third Ed. Upper Saddle River NJ: Pearson Education Inc. 2012. Pg 203-208;212-215
(2) Guccione A, Wong R, and Avers D. Geriatric Physical Therapy. Third Ed. St Louis Missouri: Elsevier Mosby. 2012. Pg 151; 217-222.
(3) Kuzuya Masafumi et al. Impact of Caregiver Burden on Adverse Health Outcomes in Community-Dwelling Dependent Older Care Recipients. The American Journal of Geriatric Psychiatry. 2011;4:382-391.
(4) Rigby H, Gubitz G, Phillips S. A Systematic Review of Caregiver Burden Following Stroke.International Journal of Stroke. 2009;4: 285-292.
(5) Sorrell J. Moving Beyond Caregiver Burden: Identifying Helpful Interventions for Family Caregivers. Journal of Psychosocial Nursing. 2014; 52:15-18.